THE Challenge! – The Lifelong Journey of Brain Injury
Categories: THE Challenge!
The Spring 2024 edition of THE Challenge! focuses on the lifelong nature of the brain injury.
From My Desk
Those affected by brain injury – survivors, their families and loved ones, and the people who treat them – all have their own stories to tell about how brain injury has changed their lives. The parts that have stayed the same, and the parts that have forever shifted. Who they were before brain injury became a part of their lives, and who they are after. This Brain Injury Awareness Month, BIAA is proud to launch its new awareness campaign: My Brain Injury Journey. Through this campaign, we will bring attention to the changing nature of brain injury over an individual’s lifetime and shine a light on its long-term effects and complexity. Read more.
Study Uncovers High Incidence of Chronic Pain after TBI
A recent study published in the Journal of Head Trauma Rehabilitation (JHTR) found that chronic pain affects approximately 60 percent of traumatic brain injury (TBI) survivors, with some respondents reporting chronic pain up to 30 years post-injury. The research surveyed patients who were being followed in 18 TBI Model System centers, a research program that includes 16 civilian and five veteran rehabilitation centers in the U.S. Read more.
The Next Big Step – Brain Injury Professionals Make Progress on TBI Reclassification Effort
The medical community took the next step towards implementing an updated classification system for traumatic brain injury (TBI) last month, as professionals from around the world gathered at the National Institutes of Health in Bethesda, Md., for a two-day TBI classification and nomenclature workshop. The current TBI classification system, which categorizes patients as having sustained “mild,” “moderate,” or “severe” TBI, has been criticized as outdated, inaccurate, and ineffective for serving patients, clinicians, or payers. Calling this system “unsatisfactory from the vantage point of all constituents,” Dr. Michael McCrea, director of the Center for Neurotrauma Research at the Medical College of Wisconsin, pointed out that no other disease uses such reductionistic language as “mild, moderate, or severe,” and especially not to categorize conditions as complex and heterogeneous as TBI. “What has bothered me for a long time now, is that we’re sitting in this antiquated, embarrassing, unenviable position in brain injury science and medicine,” he told attendees. Read more.
Survivors in the Spotlight – TBI Classification Workshop Features Testimonials from Patients with Lived Experience
As part of the TBI Classification and Nomenclature Workshop held last month at the National Institute of Health, several individuals who have lived experience with traumatic brain injury (TBI) were invited to participate in a panel discussion to offer their personal perspectives on the current TBI classification system. Although each panelist had a unique story and experience with brain injury, with the severity of the initial injury varying greatly from person to person, a common thread amongst every participant was that the current classification system did not accurately reflect their own brain injury journey. Read more.
Committed to Driving Positive Change
John Del Cecato, a seasoned political professional with a career spanning nearly 30 years, embarked on his journey in the political landscape by answering phones and making coffee for Dick Gephardt, the House Democratic Leader. He went on to work on local, state, and national campaigns, helping to craft media and communications strategies for politicians including Barack Obama, Pete Buttigieg, Bill de Blasio, Deval Patrick, and others. He eventually settled in New York City and formed a close partnership with mentor David Axelrod. During that time, John witnessed firsthand the transformative power of nonprofits in creating real change, when David and his wife Susan started a nonprofit dedicated to epilepsy research. However, the fall of 2021 brought an unexpected turn when an electric scooter ride in Ohio resulted in a severe traumatic brain injury. With no memory of the incident, John woke up in the ICU facing a challenging recovery journey. Neurologists, ENTS, and audiologists played crucial roles in his recovery, conducting a slew of x-rays, MRIs, and CT scans. Read more.
Building Resilience after Brain Injury
Brain injury can leave us feeling lost, like every part of our lives has been drastically affected. Many of us are overwhelmed by the questions of what our lives will look like now, and how we should take our next steps. Building resilience is a key part of moving forward after brain injury. As members of BIAA’s Brain Injury Advisory Council, we live these challenges every day. Read more.
Affiliate News
See what BIAA’s Affiliates have been up to in the first part of 2024. Read the article here.
Our Allies in Caregiving
I walked past Tommy dozens of times before I really saw him. He was a slight man, who sat out of the way in the Starbucks at our local Target store, and I’m sure for many months that I didn’t give him a second thought. In retrospect, I can see myself hurrying past, anxious to get errands done, to get back to my work. In that Target, I’m usually with, and very focused on, Robert, who in 2003 lost most of his memory from an anoxic brain injury. It was the often-overlooked Tommy who gave me a valuable lesson about caregiving. Read more.
Advocacy Update: The Traumatic Brain Injury Act
The TBI Act provides much-needed support for persons with brain injury. The TBI Act was passed in 1996. At the time, it was the only federal legislation that specifically addressed TBI prevention, research, and service delivery. The law provided funding for research and grants to states to create systems of care for persons with brain injury. It’s up for reauthorization in 2024. Read more.